Book Review: Patient 1 – Forgetting and finding myself

Patient 1: Forgetting and Finding Myself
By Charlotte Raven, Daniel Raven and Professor Edward Wild
Published by Vintage
ISBN-10: ‎‎152911280X, ISBN-13: 978-1529112801
Buy this book from Amazon UK

A misery memoir is a literary creature that I generally avoid when perusing my local bookshop as sadness is not an emotion I consider in short supply. Few works in this genre have succeeded in retaining my interest without drowning me in sorrow (eg, When Breath Becomes Air by Paul Kalinithi). However, when I heard that Charlotte Raven was documenting her experience with Huntington's disease, a condition which I have worked on for half a decade, it seemed like the ideal opportunity to test the waters again.

Charlotte Raven rose to journalistic prominence in the 1990s with incendiary, feminist and reactionary articles in publications such as Modern Review, the Guardian and New Statesman. Although her razor-sharp wit remains, her autobiography, titled Patient 1: Forgetting and Finding Myself, is often messy, disjointed and tangential – as she herself admits – but it is this reflection of Huntington's disease itself which makes it an honest and insightful account.

Charlotte confesses, 'I am annoyed and I am annoying. I am consistent and unreliable. I wanted this book to be an accurate record of what it is like to exist with Huntington's disease and to feel your brain and personality crumble.' With remarkable vulnerability, morbid hilarity and often extreme self-criticism, the author avoids the morose pitfalls of the genre as she chronicles the rise and demise of her marriage alongside the generational impact Huntington's disease has had on her family.

Similar to the Huntington's disease-causing gene itself, Charlotte's life underwent a mutation following her diagnosis as she grappled with maintaining a career reliant on her mental prowess. As she notes, 'I was more afraid of living with Huntington's disease than dying from it… I wouldn't mind shaking or stumbling if I could still land a punch intellectually.'

This is an unsurprising reaction considering the severity of Huntington's disease, which involves progressive loss of motor control and degeneration of short- and long-term memory. 'You lose your identity, and some of your humanity, while remaining aware enough to keep a tally of every loss.' These features are clearly detrimental; however, it was surprisingly interesting to consider symptoms which are seldom discussed in the research field but can be nonetheless debilitating.

Although psychotic behaviour is dismissed with understated humour ('the madder I get in Kentish Town, the more I fit in,'), Charlotte's impaired emotional processing has wide-reaching consequences. At one stage, her husband chastises her by saying 'You empathise with the migrants dying in the Med, the homeless man camped outside the betting shop… but you don't empathise with me. Or the children!'. Charlotte acknowledges her lack of empathy as the linchpin of her marriage's demise and this fact made me entirely reassess which symptoms could be considered important in a Huntington's disease gene carriers' experience.

Additionally, it is in Charlotte's approach to her empathy which enables Patient 1 to escape the shortcomings of memoirs that fetishise trauma and lack self-reflection. Charlotte never lingers unnecessarily and takes accountability for the impact of her actions to eventually conclude 'I do feel I'm at a crossroads where my skewed perspective might tell me something interesting about 'normality… I have been knocked off my pedestal and am more in touch with other people now than I have ever been.'

Patient 1 also discusses the generational connection of Huntington's disease with an almost spiritual reverence. This is apparent when parallels are drawn between Charlotte and her paternal grandmother, Ida, who similarly rejected societal gender norms but was rejected in turn by society for her erratic Huntington's disease-related behaviours.

In another instance, Charlotte watches her father succumb to violent chorea near the end of his life. She is 'sick with fear that this scene would be repeated by a wretched, contorted future version of myself in another bed and a different room in who knew how many years' time.'

Having to observe a family member experience what is potentially a morbid preview of your own fate is, thankfully, incomprehensible to me and it is unsurprising that Charlotte thereafter considers alternatives to life, such as Dignitas.

Slightly tangential, but the situation is reminiscent of the question posed in Arrival by Denis Villeneuve ('If you could see your whole life from start to finish, would you change things?') and I appreciate that Charlotte discusses the topic with matter-of-fact banality and does not attempt to glorify the subject to appease public curiosity.

There are undoubtedly emotional elements to the narrative, such are the ironies of writing a memoir with dementia: 'As I approach the end of this book, it's striking me that I can't recall anything in it, which is a strange feeling.' I was unexpectedly moved by such a simple statement, which likely reflects the fear of losing my own identity, yet the overarching tone of the book is far from sombre.

There is no neat narrative arc which ends with our 'victim' conquering the disease, but Charlotte admits that after reflecting on her experiences and appreciating the family around her, 'The future suddenly looks bearable, if not exactly bright.' To have any other upbeat conclusion from Charlotte would have felt disingenuous.

Buy Patient 1: Forgetting and Finding Myself from Amazon UK.